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Being a Teenager with a Tube

Michaela Shelley

Being a teenager is difficult. It is the time in our lives when things are changing dramatically. We get to do all these things we haven’t done before: driving, high school, gaining independence, going off to college, prom, and many other monumental life events. It’s a time when we should feel invincible, and want to feel in control. It’s a time when we have lots of emotions in our heads. We aren’t adults yet, but we aren’t little kids either.

Michaela enjoys a day at the pool.

Being a teenager with a feeding tube or IV nutrition and multiple medical challenges opens up uncharted territory. Having a feeding tube or IV catheter doesn’t make teenage things impossible, but it does sometimes complicate things. Chronic illness and needing a feeding tube also take away our sense of invincibility, and our ability to feel in control. And while we are able to understand what is happening (i.e., with some medical issues), we may not get it fully. We don’t have the experience adults have, which can make things confusing and complicated at times.

Most people don’t even realize teenagers can get really sick! When they think of feeding tubes, they think of premature babies or the elderly. So sometimes we feel invisible. But you can get sick at any age, and teenagers get sick in the prime of their life, when we should be enjoying life to the fullest.

Living with a Feeding Tube

I had my first feeding tube placed in November of my first year of high school. I have gastroparesis, along with mitochondrial disease and other issues. Gastroparesis means my body is unable to move food through my digestive tract properly. After I got my feeding tube, I started to feel better within two weeks. I had loads of energy and the best thing of all was the pain I felt when I ate was gone! I didn’t have to worry about eating enough or the pain.

My feeding tube gave me my life back. I was able to play soccer, go swimming, spend nights out with friends, go to Homecoming and many more fun-filled experiences any teenager should have. My feeding tubes have never stopped me from being able to live my life. They have only helped me thrive and for that I am very thankful.

Many teens with feeding tubes are embarrassed because they rely on a feeding tube. However, I am the exact opposite. My motto is “Never be ashamed of something that keeps you alive.” I have kept to that since day one. I wouldn’t have this life without my feeding tube! I wouldn’t get to do the things I am currently doing. I played soccer with my feeding tube before I became seriously ill (more recently) and was no longer able to play. I can still do most everything everyone else can, only sometimes I have to do things a little differently.

I have come to learn people will stare at my tube. To be honest I don’t really mind the stares. I have noticed that most people are only curious and want to know more. Yet there are the few people who tend to make the situation awkward. I want them to know why I am the way I am and what makes me special. Those who are rude don’t look past the disease and the tubes. They don’t see the amazing person I can be. The person who loves life for what it is, the person who has struggled but come out victorious, and the person who has more compassion for people than you may ever know!

Challenges

Not everyone who has a feeding tube is unable to eat by mouth, but I can’t eat anything. It makes social situations hard. It’s hard sitting on the outside at a party surrounded by everyone eating cake. Food is part of our culture. It’s involved in so many different events. When you think about it, every holiday has something to do that includes food (Christmas cookies, Halloween candy, Thanksgiving dinner, birthday cake, Memorial Day BBQ, and much more). I wish people would be more understanding about that. Our social life does not have to contain food all the time! It’s hard watching others eat something I know I am unable to have.

We aren’t adults yet but we aren’t little kids either. We don’t want to be treated like little children. We can understand what the doctors are doing to us and why, and sadly, what comes with that is having the knowledge that sometimes we are going to have to feel worse before we can feel better, which may cause even more conflicted emotions. We are very capable of understanding and aware of what is going on in our bodies. We are just like any other young adult except we have these extra challenges in front of us. Our disease does not inhibit our ability to comprehend what you are saying.

As teenagers, it’s hard keeping our emotions in check. Even adults know it’s hard keeping emotions in check. Being sick and dealing with added emotions on top of trying to manage the normal teenager aspect of life is quite the ordeal. Imagine being fourteen or eighteen and having all your new found independence stripped from you. What if you needed someone to help you get to the bathroom, to walk, to shower, to give you your needed medications, to take you to your doctor’s appointments, and be there at the hospital with you during your stays almost 24/7? I think that is pretty difficult for a grown adult to grasp, much less teenagers.

Sometimes our friends can’t truly relate to us because they don’t know what it’s like to be sick and not have the energy to get out of bed in the morning. We want to go to school, but we just can’t. Missing out on social events and the daily aspects of life for hospital stays, treatments, and doctor appointments makes us feel isolated. We don’t want to lose our friends, but life goes on with or without you when you are in the hospital unable to do much of anything. You feel isolated, like no one understands you. There’s no one to relate to and you certainly aren’t a normal teenager anymore.

It is hard enough being a teenager and having to figure out what you want to make of yourself and grow up to be. Adding on a chronic illness makes that ten times harder. Some days I feel as if life hates me. I can never win this war and just because I want something to turn out a certain way doesn’t mean it will. Ninety-eight percent of the time, life does not go my way. If life did go my way, then I wouldn’t be sick, or have all these diseases that people can’t pronounce and have never heard of. I wouldn’t have tubes sticking out of my body and I can certainly tell you I would not be taking all the pills I am taking now. I would be healthy; I’d be back playing soccer; I’d be attending school every day, and finishing classes on time.

A Plea for Understanding

Please don’t forget us. Treat us like you’d treat any other teen; however please understand that we may not be able to do everything our peers can do. Sometimes it might be hard for us to express how we feel. So many emotions just overwhelm us, making it hard for us to share with you exactly how we feel. Most days, we don’t even know how we are feeling.

We are not adults and we are certainly not children. Our life varies from theirs, in how you need to treat us and the disease. It’s certainly a crazy journey, and it is not an easy one either. All I ask is that you treat us like you would any teenager, and be able to help us along the way but also while giving us some space to cope on our own. That would be the best sort of support to offer.

Update: I am now seventeen years old and going into my senior year of high school where I am an honors student. I’ve been on home parenteral nutrition (HPN) for roughly two years now and am currently trying to work my way off entirely to get back onto enteral feeds. I’m looking forward to the school year as things are going well for me and I hope to be able to be in the classroom more than not this year. I enjoy writing, public speaking, and being able to advocate for those who don’t have a voice through my blog. Life is fantastic and I am so thankful for HPEN for helping me get this far! Visit my blog at Chronicallyawesome23.blogspot.com

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

Updated in 2015 with a generous grant from Shire, Inc.

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.